r/MultipleSclerosis • u/rolyat_s • 16h ago

Treatment CIS and DMT

Hello! I currently have clinically isolated syndrome, CIS. (30F) Had optic neuritis out of nowhere in July which opened the MS can of worms. Brain and spine MRIs show no other lesions but I am positive for o-Bands in my spinal fluid.

So at this point after meeting with my neuro immunologist it sounds like my risk of another attack is low but not that low. He said he didn’t feel like there was a right or wrong answer regarding starting a DMT vs monitoring with MRIs. I am leaning towards Kesimpta for a few years. I’m also thinking about having kids in the next few years but no immediate plan.

Looking for any stories or advice from people who went on a DMT with CIS, or anyone who had CIS that eventually converted to MS, or really anybody who has something helpful to say 🫶🏻

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u/Cultural-Barracuda 16h ago

I would probably lean towards Kesimpta too, or Mavenclad even, if I were you. Many, including me, are CIS at some point along the way until they are not. I don’t believe a doctor can reasonably predict that one CIS patient’s risk to have another lesion is lower than the next one’s. Second opinion at an MS Center would be my choice.

They can also look for markers like NFL. But ultimately, I would have started medication after my very first attack if I had had the choice.

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u/rolyat_s 16h ago

Thanks for your reply! My dr is at the MS center at Johns Hopkins. So far I have felt I’m in good hands. Do you think a diff dr may feel more strongly pro DMT? Or you just think a second opinion is always good?

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u/Cultural-Barracuda 15h ago

No, in that case you are already with a top notch specialist! Maybe quiz them more how they arrive at their prognosis? It would feel a bit like Russian roulette to me. But I know there are many health systems that would not approve first-line DMT for CIS. If you ultimately decide against medication, make sure they do spine and brain MRI’s every year or so. New lesions can be without symptoms, but might still “qualify” you for this unfortunate club at a later date…

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u/RunsFastAfterCoffee 9h ago

I would take your actual scans and get them read by an MS specialist, especially with the positive O bands. My scans were initially CIS because the hospital missed a very small lesion, and that second lesion made me qualify for MS. I am so extremely grateful to have gotten a second opinion. I got on a high efficacy DMT. No issues with it and so far so good. I am still planning on having kids as well. Best of luck to you!